Talk to Bernadette Howell about what can or what should be done about fetal alcohol spectrum disorder and how to stop the preventable condition that ruins so much human potential, and she apologizes for getting on her high horse.

After raising two adopted sons and enduring the process of discovery and diagnosis, Bernadette has seen it all.

Her fatigue and frustration about the lack of help or awareness can be felt through the phone lines from her North Vancouver home as she recounts her decade-long voyage that began in 2000, when she and husband Dominic adopted two victims of the Romanian dictator Nicolae Ceausescu.

As did many in Ireland, the couple rescued two brothers from a Romanian orphanage, only five and eight years old at the time, and brought them home to Dublin to raise as their own.

Under Ceausescu’s iron fist, women were to breed and produce large families. Abortions and contraception were banned, leading to unwanted children languishing in overwhelmed orphanages.

Bernadette and Dominic knew the boys would face challenges adjusting to a new land and a new family.

What the couple didn’t know was they were also adopting a lifelong condition that would last beyond their parenting years.

The trials began when her eldest approached 12 years old, a time when most kids start testing parental boundaries. Bernadette, though, found that her eldest’s behaviour, and later that of her younger son, went beyond youthful disobedience and extended to an inability to follow any directions.

At first, she blamed those difficulties on defiance, or adapting to a new land. But it was the alcohol-addled brains, the fetal-alcohol conditions in both of the boys causing the frustration.

“Parents are giving up on them because they don’t know what they’re dealing with.

“I know because I couldn’t cope myself.”

Bernadette is still on sick leave, trying to recover from caring for her kids.

As the years go by, she doesn’t expect it will get any easier.

There is no short-term respite care for parents of FASD kids to give them a break and recharge so they can resume their parental duties.

What helps is a definite diagnosis that FASD is the cause behind the difficulties.

It wasn’t until 2008, following two visits to Sunny Hill Health Centre in B.C. Children’s Hospital in Vancouver that the Howells received that relief in the form of a confirmation of FASD.

Weekly visits by a key worker from the Ministry of Children and Family Development helped Bernadette and Dominic relearn the tough job of parenting an FAS child.

The couple knows they’re dealing with a life sentence. It’s a burden they happily bear and would adopt an FAS child all over again, because he or she would be in the greatest need.

But they need some help, a break once in a while, respite care where the parents can leave their kids under supervision for a few days while mom and dad catch their breath.

The only way Bernadette can do that now is, literally, to give them up to the ministry for three months by placing them in temporary foster care.

While parents of autistic kids get financial support, those caring for fetal-alcohol kids get nothing.

“We’re desperate for more services around that,” said Bernadette, who’s writing a book detailing her experiences.

Only after diagnosis, usually only done at Sunnyhill or at Maple Ridge’s Asante Centre, can parents qualify for support, which includes training, mentoring and support groups.

Key workers can help with education and information, health services and emotional and practical support.

Funding for the ministry’s key worker program, which supports families with FASD kids, has doubled since 2005, noted Children and Family Development Minister Stephanie Cadieux.

While FASD kids struggle in school, it’s not for lack of intelligence.

“They’re as bright as anything,” Bernadette adds.

Her youngest, now 17, has been in and out of school the last year. For him, verbal interaction creates stress and conversation can grate on his brain.

Her eldest son, now 20, managed to graduate, despite writing a final exam while hung over.

FAS kids are susceptible to drug and alcohol abuse, she points out, partly because they lack judgment, partly because their brains don’t know when enough is enough, as well as a predisposition to addiction that’s part of the fetal-alcohol condition.

Low self-esteem and vulnerability can lead them into trouble of many types.

He’s still struggling with drug and alcohol addiction and he realizes he’ll have to stay awhile in the Pathway to Freedom transition house in Surrey, where there is structure and support.

“That’s huge for people with FASD,” she said.

The parents know the challenges will go on, but are unbowed. Their love for their sons shows in the equanimity and affection displayed during a visit to the halfway house.

She took her eldest back to his birthplace in Romania in 2011, where he met his birth mother during a moving reunification.

“It was amazing. Unfortunately, she’s still an alcoholic.”

More education remains

After bringing their two adopted sons to their home in Dublin, Ireland, Dominic and Bernadette made a new start and moved across the ocean in 2004.

“Little did we realize, when we came to Canada, it was the best thing, when it came to fetal alcohol awareness,” she said.

North America, and Canada in particular, is a leader in recognizing the condition.

But more work needs to be done.

Many still don’t understand the unwieldy term, fetal alcohol spectrum disorder, the umbrella label which covers all alcohol-related neurological damage that can cause learning difficulties, or problems in memory, reasoning or judgment.

According to a B.C. Liquor Stores pamphlet, heart problems, along with hearing and vision problems are also part of the fetal-alcohol spectrum.

“Half the world doesn’t know what fetal alcohol spectrum is. I’m constantly talking to people about FASD,” says Bernadette.

“To me, it has to start in the school setting, as well.”

Teachers and students should learn about the condition so they better understand behaviour of their students and classmates. That can be kept in mind before girls reach the legal drinking age. A fetus can be affected by alcohol before a teen girl even knows she’s pregnant.

“It’s the people who are binge drinking who are drinking, those are the people getting pregnant,” Bernadette says.

The condition knows no socio-economic boundaries, she adds, pointing out that FASD is in her own neighbourhood of the well-off North Shore.

“I know it exists here. I can see it.

“Wealthy families get drunk. Wealthy families get pregnant.”

So discussion and awareness should be widespread, said Bernadette, who likes the District of Maple Ridge’s 2012 bylaw, requiring pubs and restaurants to post warning signs in their premises and on menus.

Unlike the U.S., there is no requirement for brewers or distillers to put warning labels on their bottles.

“They can put warning signs on cigarette packages, but they don’t put them on liquor bottles.”

Cadieux agrees more can be done.

“I think there’s always room to look at additional strategies.”

But a requirement to put warning labels on beer, wine and liquor bottles would have to come from the federal government, although that’s something the B.C. government could advocate, she added.

“Ongoing awareness is always a challenge to ensure people get and receive messages. Which one sticks is a challenge, for sure, but it’s important.”

It’s not enough, says Bernadette.

“But there should be more than that. There should be more discussion about it.”

Those working to prevent FASD, should follow the strategy of Mothers Against Drunk Driving, which constantly reminds people about the dangers of drinking while drunk.

“It needs to be in your face. It needs to be in restaurants. It needs to be in pubs.”

According to Allison Pooley, program director with The Asante Centre, prevention can be achieved by helping moms swept up in the alcoholic lifestyle who are under constant pressure to drink.

Support can help them resist that pressure and allow them to nurture a healthy baby.

No amount of drinking while pregnant is safe, she adds.

“There’s no safe time, no safe amount.”

She repeats a point she made previously: booze is more dangerous than hard drugs when it comes to damaging the infant brains because it’s water soluble and mixes with bodily fluids.

The statistic that nine of every 1,000 babies are born with FASD is a conservative number and the actual rate could be 20 times that, meaning two to five per cent of the population is affected.

It’s an invisible disability that people hide well.

“For every 100 people you meet in one day, you meet somebody with FASD.”

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